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And My Journey Continues...
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7 posts in this topic

Negative celiac blood work

Positive dietary response

Dec 26 ate at o'Charleys (gluten free menu), started with normal uh oh I had gluten response that progressed to anaphylactic shock and ER visit

Jan 11 food allergy testing. Not allergic to anything, but doctor is worried about Mast Cell disorder with wheat and/or gluten as the trigger (this disorder causes allergic reactions to triggers without having a true allergy) started on Zantac 300mg and Allegra 360mg a day. Dr feels I am safe to eat whatever.

Yesterday we ate out (cheeseburger with chili, no bun, FF). I felt a little of my gluten response. I mean just a little (could be the Zantac helping-even though its a tummy med, Techanically it's an antihistamine). About an hour later I started itching ALL over, came home and took the Allegra and within 30 minutes I was fine.

Today, I just took both meds in AM so that it is more in system during day. Wednesday I will start the 24hr urine test and drop it off Thursday am and have blood work done at that time. So my journey continues, but I'm still avoiding gluten/wheat since it is a trigger for something in my body.

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Sorry but that sounds like a true allergy to me. Skin testing is not 100%. If that is what causes it, then avoid it at all costs. I'm surprised you weren't given an epi pen to carry.

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I alredy have them due to bee allergy.

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You may want to limit the "eating out" routine, until you have this situation diagnosed. Do you have an inhaler, in case your breathing constricts? (wheat can cause asthma in some people) And sorry you found out that restaurants can vary on how they handle cross contamination. Scary. And thank God for antihistamines.

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caseine and chili are potent allergies, with cheese I get an itch all over and chili raises my pulse sky high

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Takala I'm back to not eating out again, just not worth it.

Seifer, thing is with this disease he is looking at I'm not truly allergic. My skin test was 119 foods, all negative.

Oh well it is what it is.

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Hi Davina-

Might want to do a bit of reading about histamine intolerance / regulation problems - for some reason it is completely off the radar for American docs

....took me a very long time to find this important piece of my wacky health puzzle.

If you can't find info let me know - I've got some great links - just no access to them at the moment.

Hang in there - you will figure this out :)

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    • i hope you tipped that waitress well????
    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
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